Monday, 4 January 2016

I used to run a book blog. I'd link to it but it's dead and I feel like dead things should stay buried. It's more respectful, that way. I stopped mainly because my computer broke and I booked a holiday instead of buying a new one. And then I got ill and so blogging pretty much became last on my list of priorities. So for 2016 I'm starting a new blog, which will talk about books but also about life with a chronic condition. And also probably some other stuff.

I was born with a condition called Joint Hypermobility Syndrome. A lot of people have hypermobile joints, sometimes called being double-jointed, and all it means is they can weird you out with a few party tricks. Or they make excellent athletes. People with JHS however, experience negative effects as a result of their hypermobile joints. These can include pain in both the joints and muscles, and fatigue. It's also often much easier to injure yourself. There's more details and a bit more medical info here. I was diagnosed with JHS aged 6, basically because various people noticed that I walked weirdly so I was seen by a Rheumatologist. My condition affected me in various ways throughout my child and teen years and some of this carried through to my adult life, which I won't get into here. But I was muddling along (sort of, mostly) until about autumn of 2014.

Over the autumn, I began getting pain concentrated in my elbows and wrist and finger joints, which radiated outwards to the spaces in between. I'd had similar pain before but really only in my knees. It felt kinda like growing pains and it was really hard to ignore. It was also alarming because I rarely ever experienced pain in my elbows, usually only if I accidentally moved them funny. And I only got a lot of pain in my wrists and hands if I used them excessively i.e wrote a whole essay by hand (thanks, university exams) or scooped ice cream for 8 hours (thanks, cinema job). But this pain wasn't caused by anything outside of my usual activities which I'd been doing for well...ages. I tried painkillers and hot water bottles, I drove my colleagues (and myself) mad with the smell of Deep Heat. And then...I stopped getting the pains. So I shrugged and moved on with my life.

I think I knew, on some level, that I was getting worse, I'd been getting cramps in my calves and feet when I walked, and more pain than usual in my knees and hips. I went to the doctor and the doctor told me I was probably vitamin D deficient so to go and get a bloodtest which I didn't do because yes I probably AM vitamin D deficient but I knew that wasn't what was causing my issue. I was so not thinking about being ill that I went on holiday to Paris without taking any painkillers with me at all. And then at the end of the first day when I was crippled due to walking like 15 miles I remembered that oh yeah, I should have probably brought some Ibuprofen because extreme exercise makes me hurt.

And then a month after that holiday, in mid July, I was suddenly hit with those growing-pain-type pains all over my entire body. It was horrific. I lay on my bed and I couldn't move and I didn't know what to do. My boyfriend ran out for emergency Ibuprofen because lol, I didn't have any (are you sensing a theme here?) which helped a tiny bit but also not really. I had these pains all weekend. On Monday morning I got a GP appointment and I told my manager I couldn't come into work. The GP gave me Naproxen (like Ibuprofen but stronger) and referred me to Rheumatology. I went home and I stayed in bed for another 2 days.

A week later I went back to the GP because the Naproxen just wasn't working. I was given Tramadol which actually did work. I spent two months in varying levels of pain and with mounting levels of discomfort in my joints (they just felt wrong, it's hard to explain. Like they weren't in right, or they were in the right place but the wrong way round. Or missing a part that, on the plan, didn't look so vital but once the body is fully assembled you realise that actually yes, that part did need to go somewhere.) In September I saw a Rheumatologist who told me that I had a really shit body. Okay, he didn't. He told me that my muscles had weakened from the strain of doing the work that my joints were supposed to do but weren't able to do due to them being hypermobile. Like keeping me upright and other such important functions. My muscles were weak and tired and they'd had enough basically. It was better news than I had expected but it was also bad news as it meant I was going to have to work quite hard to sort myself out.

And so I made the decision to quit my job and leave my life in London and move back to Manchester. My family and my boyfriend are in Manchester and so my rehabilitation now comes with cheerleaders. I'm living back at home and I'm hoping that the change in pace in my life (working less, going out less, being looked after by my mummy) coupled with regular exercise and some physio will mean that, in about a year, I'll be healthy again.

I'll be charting my journey or whatever on this blog and also talking about things I like such as books and the theatre and going to the cinema and watching entire TV series in a day. I hope it'll be entertaining but not in a laugh-at-my-failures way and that I'll meet other people like me who live with chronic conditions and are trying to make themselves as healthy as it's possible to be.

TL;DR I was ill and then I got more ill. Now I'm back at home in Manchester trying to be less ill.